Great Ormond Street Hospital (GOSH) takes palliative care to the family home

Dr Finella Craig visits the families she is supporting in her role at The Louis Dundas Centre at GOSH.

‘When people are living through really dif­ficult situations, all the worldly stuff gets stripped away, and you can see their real personalities,” says Dr Finella Craig, a consultant in paediatric palliative medicine. “You see how resilient peo­ple can be; how they can cope with situations that you imagine would be impossible; how they can still find happiness and smile.”

I am accompanying Dr Craig on home visits to three families she is supporting in her role at the Louis Dundas Centre (LDC) for Children’s Palliative Care at Great Ormond Street Hospital (GOSH). Last year, the LDC made more than 2,500 visits to young patients with life-limiting and life-threatening illnesses, and took on 374 new referrals.

The extraordinary care, support and research undertaken by the LDC are, for the outsider, distressing to contemplate, perhaps. But GOSH is determined to highlight both the centre’s importance to its patients and their families, and, crucially, the acute need for such care across the country.

The LDC itself was founded in 2009 by Ruth Kennedy, after she had had to watch her beloved four-year-old son Louis die slowly in “unspeak­able pain” after he developed a brain tumour. She was determined to raise money to fund a centre of excellence in research, training and support in palliative care for children because “we should look after people in these terrible circumstances as best we can”.

On the road with Dr Craig, I want to know what motivates her to do such a difficult job. “You see wonderful people dealing with horrible situations and you can help make it a little better,” she says. Dr Craig is being modest. Her support has a huge impact on the families she works with. And she is able to give such dedicated care to children and their parents – who are having to cope with the knowledge that their child will probably die before them – because of the ground-breaking research carried out by the LDC.

Although the LDC has a centre at GOSH, where its 35 staff have offices, the care takes place not only there, but also at hospices, other hospi­tals and in the children’s own homes, where staff support and train families to manage symptoms and pain.

It is early days for paediatric palliative care – as Professor Myra Bluebond-Langner, head of the LDC’s research team, says, “This research has only begun to establish itself in the past 15 years” – and the LDC wants to find better ways to ease pain and reduce distressing symptoms.

But palliative care is not just about pain man­agement. It encompasses the emotional, social and spiritual aspects of wellbeing. It’s about enhancing quality of life for the child as well as offering support for the family, including for bereavement.

This is why Dr Craig visits parents throughout their children’s lives, deaths, and beyond. “Sometimes you help make things better by doing something clever with medication,” she says. “Sometimes it’s by being there and listening.” In return, she gets to witness “the intensity” of the love these parents bear for their children.

Sonay Mustafa’s daughter, Kader, died in GOSH in January 2014 at the age of seven. During a difficult birth, Kader’s brain did not get enough oxygen, leading to neuromuscular dysfunction affecting muscle tone, skeletal development and respiratory function.

Kader was first referred to GOSH in May 2009 when she was 21 months old. Just before Kader turned five in 2012, her breathing became more difficult and she was referred to the LDC palliative care team. For two years, the team helped manage Kader’s pain and symptoms, as Sonay cared for Kader at home.

“Kader would smile through anything, even on the days she was struggling. You just had to touch her hand and she would give you this huge smile and suddenly your day would be fine.

“Dr Craig got involved with Kader’s care when she was nearly five. Kader was very ill by then. Her breathing had become a real problem. From so many paediatricians, I heard, ‘She is not going to live long, there is nothing we can do, we don’t want to give her too many drugs.’ Then Dr Craig and the palliative care team came. I couldn’t believe the difference. I always say if it wasn’t for the palliative care team, Kader would have died struggling and in pain.”

Serdar Agirman and his wife, Pelin, are the parents of two-year-old Ruzgar, who was diagnosed with spinal muscular atrophy at GOSH in December 2014. They also have a baby daughter named Karia. Ruzgar attends GOSH for tests and assessments. Since the day Ruzgar was diagnosed, the palliative care team from the Louis Dundas Centre has been supporting the family to care for him at home as much as possible.

“We found out Ruzgar was very sick when he was five months old. It was a big shock. We had never heard of this illness before. We didn’t think he would survive this long – we were told it would be three years, maximum,” says Serdar.

“Before, we were in our local hospital every week or twice a week, but thanks to the support of the LDC, we can now do most things at home. If Ruzgar gets ill, we can usually treat him ourselves with antibiotics. It’s so much better than dragging him [to the hospital].

“Dr Craig is the main contact if I have any worries. She is on our side and she knows Ruzgar. I can text her on a Sunday and she will call me straight back. Without this help, I don’t know how we would have done this.”

Find out more about The Louis Dundas Centre and read about Ruth Kennedy’s fundraising for palliative care.

Give to GOSH now and help us provide even more care and support for families.

Adapted from an article originally published in The Independent on Sunday on 31 January, 2016. Words by Karen Attwood and photographs by Andrew Parsons/i-Images.